When Grace was two and we were much newer at special needs parenting we grappled with this feeling of always being vulnerable simply because Grace was Grace. We could be having a great day but find ourselves quickly feeling miserable, or angry, or scared, or frustrated by big or little things. It could be the stare of another child. It could be a phone call from a doctor with lab test results that needed addressing. It could be someone at work complaining about their healthy kid throwing a fit at Target and wishing with all your might that Grace would throw a fit at Target. It could be dropping all the plans you’d made for something fun because Grace was hospitalized.

Looking back we were struggling against not being in control and feelings of helplessness. There were people in our life at that time (some of them are still around) who helped us in big and in small ways. Sometimes honestly all it took to feel better was for someone to say something kind. For someone to want to hold Grace. For someone to offer an idea we could run with, a different perspective on Grace’s abilities, or even just to convey they thought Kevin and I were doing right by Grace.

At some point in her second year, we came up with the idea of the scarf to try and explain our experience as special needs parents.

Here’s how we explained it to ourselves. Being a special needs parent is like being outside in winter on an especially cold and windy day. You aren’t there unprotected from the cold. You have boots, a warm coat, gloves, and a hat…you did what you needed to do to go outside. But somehow as you are out there walking, thinking you are all bundled up, cold air gets in under your coat and you are beyond freezing. A scarf would have prevented that cold air from sneaking in.

In our lives, we have to depend on other people to play the role of the scarf for us. To think that we can do it all just the two of us is too much.

So we played with the idea for a few years, it just kept coming back up. Then at some point we decided that sometimes it would be good to give an actual scarf to the people who are our metaphorical scarves. We made a card with an explanation. On the back of the card we make it all official using the tagline “a pink helmet production”. There’s a picture of Grace and Hoover that appears above the tagline. We take a picture of Grace wearing the scarf to put in the card. We tie the scarf with pink ribbon. And then we get it to the person. We don’t have strict criteria for receipt. And honestly, there are people who deserve one that we haven’t given one to.

I’m working on four scarf cards tonight. Four women who have been a scarf for us and should know how grateful we are for the role they have played in Grace and our lives. They all brought warmth in different ways. Our story isn’t the same without them. In a lot of ways a scarf is a small token of appreciation but hopefully, it is something that will impress upon them our gratitude.

It’s amazing to me that a metaphor we came up with when Grace was two hangs on today now that she’s 12. I also don’t believe we’ll ever outgrow it. What was true then remains true now. We are vulnerable simply because Grace is Grace and we will always need people to come alongside us in big and small ways so Grace can be Grace.

We (Kevin, Grace, Graham and I) left for Minnesota on a recent Sunday. Our van was packed pretty full for a two-day trip. Grace doesn’t travel light. (That’s a different blog post entirely!). Graham packed his own suitcase with the following belongings; a Santa hat, his Little Passports suitcase, slippers, his bug jar, books, sleeping friends, and Thomas the Train.

He was delighted to stay in the hotel that first night. He had a whole bed all to himself. He swam in the hotel pool. Pizza was delivered to our room. Disney Jr. was on TV.

Grace was happy to be out of the car.

Grace had three appointments over two days. First, we followed up with the plastic surgeon about her eyes. All looks good. The swelling could last a few more months. We have one more appointment with the surgeon in January. After that, we will continue to watch her eyes with the eye doctor. If we see drooping again we go back to the plastic surgeon. Graham sat on my lap for the appointment. He played on the iPad at times putting his hand on my cheek and pointing my head down to see what he was doing.

After that, we went to Culver’s for lunch. One thing that’s different about Minnesota with Graham than without is our food choices. When Graham is with us we frequent restaurants that serve chicken nuggets, chicken strips, pizza, or pancakes. At this particular Culver’s we were able to watch the trains (the light rail) go by. Graham led us straight to the tables by the big windows so we wouldn’t miss a single one.

We got to the second appointment. This one was with Grace’s urologist. The appointment has several steps; first an x-ray, then an ultrasound, then height and weight, then the doctor. Here’s where we had trouble. Grace needed to be cathed, needed meds, and needed food all at the same time. Graham wanted to be playing in the kid area on the other end of a large waiting room. That left one of us trying to get to all of Grace’s needs. We travel with a green bag full of Grace essentials. We put it on the back of her wheelchair. Things are organized and sorted into baggies. We need water – hot water for meds and some at room temp to keep her hydrated. There are gloves, lubricant, catheters, and wipes. Medicine, medicine crusher, syringes, and tubes are all in there too. Then the box of formula – that sometimes, depending on how you open it, drips a small amount of sticky white liquid on your hand, or the tube, but you are powerless to do anything about it because if you let go those few drops could become a lot more.

Graham was sure we were done after each step of the appointment. Because we were trying to meet both their needs we ended up feeding Grace as we talked to the doctor’s nurse and then the doctor. When we were with the doctor Graham did excellent. The doctor told us Grace will need a surgical revision of her mitrofanoff. This is not an immediate need. We have some tricks we can try to buy us some more time. Neither the doctor, Kevin, or I want her to be in surgery anytime soon.

Once we were done Graham was so excited. The Lego store at the Mall of America was next. But then we had to wait some more to schedule Grace’s follow up appointments.

All that done we left the hospital, went down the circular parking ramp, where Graham went “whee” and declared that he loved driving in circles. We were ready for his part of the trip.

He’d told us when we planned the trip that he definitely wanted to go the Lego store. It turned out he wanted to go to no other stores. Lego store was done he was ready for his next objective. A train ride.

Grace was done being in her wheelchair.

After the train ride where Graham got to go under the airport on the light rail it was back to the hotel. He ate some pizza, played with his Legos, and went swimming in the hotel pool. He fell asleep in another big bed – all for him- watching TV.

We went to the breakfast buffet in the morning. He chose Cheerios. We talked with a few girls eating their breakfast. Graham and one of the girls had a jumping contest to see who could jump highest.

We packed up to head to Choo Choo Bob’s – Graham’s final objective. As we left the hotel room he made Kevin stay behind but led Grace and I outside to see the singing rock he and Kevin had discovered when we first got there. The singing rock is actually a fake rock with a speaker in it. He was so excited to show it to us. He did a little tap dance as we listened to the music.

Choo Choo Bob’s was a lot of fun. We had to leave story hour after only 10 minutes to get Grace to her final appointment. Graham handled it well. Way better than is even fair to a boy at Choo Choo Bob’s. The last appointment was the eye doctor. Eye doctor appointments take at least 2 hours. Grace wasn’t being particularly cooperative. Graham actually scared the doctor when he popped out of the chair he’d been sitting in very quietly. After she’d recovered the doctor started talking about Grace’s next appointment. Graham interrupted her piping in that he didn’t think Grace should have any more doctor appointments.

Then, there were chicken nuggets for lunch with fruit punch to drink. We started driving home. Graham wanted to be home 20 minutes after we left.

I sat in the back of the minivan between the two kids as we drove home. There were moments when my shoulders held both their little heads. We’d done it. It wasn’t always pretty. Kevin and I hadn’t really unpacked any of the information we’d heard. Having Graham there prohibits some of that. But we’d seen a singing rock. Graham had gone under an airport. Grace doesn’t have to go back to Minnesota until January. We’d done it leaving no man behind. We’d done it together. I don’t feel like Graham should have to be with us every time, but sometimes he should be there. She’s his too.

A few months ago he’d asked me why anyone would stay in a hotel if their sister wasn’t having surgery. I tried to explain the whole concept of vacation.

Grace is home. I’m relieved. And as if she wasn’t being watched carefully enough by doctors we’ve added an infectious disease doctor to the mix for the next two weeks or so to make sure she is all clear. We like him – he’s been amazing to work with. It sounds like we’ve actually been lucky. Only the culture from the ER showed MRSA, the one from Tuesday showed plain old Staph, and from Wednesday on nothing showed up. We caught it early. The seizure on Monday morning that made her fingers start turning blue was a blessing in disguise.

The good news/bad news, depending on how you want to look at – is that the infectious disease doctor is the guy we call if this happens again. The chance is real it could happen again. Sigh.

I’ve been thinking a lot about the book The Velveteen Rabbit this week as we’ve gone through all of this. There’s this scene towards the end of the book where the stuffed rabbit is old and worn and another old and worn toy explains to the rabbit that this is what it means to be real. To be made real by love. He explains that to become real happens over a long time.

I have felt really old and worn out this week. Incapable of keeping all my stuffing inside. I also recognize it’s because of love that I feel this way. I recounted almost every day of the last week to the nurses taking care of Grace in the hospital that she had a normal birth, that we didn’t know anything was different about her until she started having seizures at about 4 ½ months. That since then we’ve been taking care of her in whatever direction she’d gone. My love for her has had to grow and change as she’s evolved to incorporate advocacy, medical skills, disappointments, risk-taking, research, wonder, and this crazy optimism that comes with special needs parenting. It’s real. Our last few months have shown me over and over how real it is.

It’s not just the love for Grace that’s made me feel that way this week. Graham has struggled. I was the one to give him the news that Grace was back in the hospital. His little face was just so sad. He told me one night this week that he hoped to wake up with germs in the morning so that I could stay with him all day. Killer.

In the midst of all of this, we have had crazy real loving moments. Grace was complaining one night I was at the hospital with her, I unzipped all the zippers on her bed and climbed in with her. She calmed down immediately – we stayed like that for a good 45 minutes – no one came in to poke her or take her blood pressure – and when I got out to get meds going she was better. I took Graham to VanDees for his last ice cream with eyes for the year. It was chilly that night, so we were the only people there. Three people waited to take our order. Graham was super nervous to order on his own with all of them looking at him, and so he whispered his order in my ear. Graham whispering is an experience. He puts his mouth so close to your ear you can feel his lips moving on your ear. It’s hushed, fast, so hard to understand, and it tickles. I couldn’t help but grin as he gave me his order. Luckily I know his order. Chocolate and white ice cream (twist) with m&m’s and eyes. Every time.

In the story, once you are real the rabbit learns you can never go back. The same is true with parenting once you become a parent it’s just not the same.

Grace is free to go back to all activities. We are watching her for cues that she’s ready to re-engage. Ready for therapies, school, baseball, dance, church, etc. It’s not just her cues we are watching – we are also dealing with our own readiness to put her back in the world with such a dramatic demonstration of her vulnerability fresh in our minds. Today she’s played some and rested some so far. She is moving in the right direction. When she’s ready we will let her go back – because we love her. We really do.

The four of us are together. We are working to enact Graham’s “when Gracie is home plan”. Tonight that means watching the Odd Squad movie as a family.

It feels like she’s home just in time. This morning on the way to school Graham told me that he didn’t want there to be any more switching and no more visiting Grace. Kevin and I are beyond tired and need to be able to sleep for a whole night. Whether we were with Grace at the hospital or with Graham at home both of us have had a hard time sleeping. The world is moving on and we have to hustle to get caught back up. The van needs to be serviced, the new parts to grow Grace’s wheelchair are in, her new braces and shoes have arrived, registration for dance is coming up, Graham is moving to the pre-K room at daycare and Grace is starting 4th grade. Plus we need to get back to work full-time.

Grace isn’t 100%. She is going to need extra help and extra encouragement to get back her strength and stamina. We need to take her back to Minnesota to see the surgeon who is anxious to “lay eyes on her”. Our pediatrician wants to see her the week after that. We’ll be watching her closely to make sure she maintains weight, gains strength, and shows no further signs of blockage. Plus we have to learn how to use the Mitrofanoff.

There are also still things to process from our experience the last few weeks. People to thank. This has been draining but we have to keep going.

One of the first things we did when we got home was take off all of our hospital bracelets. We have been wearing the bracelets for 14 days. It was a constant itchy plastic reminder and symbol that Grace was in the hospital. She even scratched her face with hers. Early on when Graham asked me what it was for I told him that it showed the hospital that I was Grace’s mommy. He asked me to take it off a few days after that so that I could be his mommy again too. They are all off now. We belong to each other – no bracelet necessary.

Grace took her normal feedings and water intake today without any issue, which means she is on track to be discharged tomorrow! The only thing we have left is to draw blood for some lab tests. While they need to check general levels we also need to test her levels on her anticonvulsants since she was off of them for a whole week to ensure she is back within her normal range.

Graham’s letter of the day for show and tell was X; Child Life had some old X-ray films for kids to play doctor with and I was going to see if I could borrow one but I forgot before going home last night. So this morning I went online to find an image. Graham thought it was really cool to have an X-ray; I guess that that was you get for spending three and a half weeks in and out of hospitals. Graham saw this penguin one that he really liked so we went with that.